The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

Chronic fatigue syndrome has devastated the lives of hundreds ofthousands of Americans. Everything about the condition--what to callit, how to identify and define it, what treatment is indicated--hasbeen subject to dispute. In fact, the patient community has long beenat odds with health officials, who have frequently framed the illnessas largely psychosomatic. Yet abundant evidence has linked chronicfatigue syndrome to neurological, immunological and hormonalabnormalities.

Now a government-sponsored panel is seeking to develop a new set ofdiagnostic criteria for the disease. The Department of Health andHuman Services commissioned the report last September from theInstitute of Medicine (IOM), an independent organization whosewell-regarded reports frequently inform government policy aboutcontroversial and complex issues.

But the panel, which recently held its first and perhaps only publichearing, is facing strong opposition from top researchers and doctorsas well as many patients. They are upset because eight out of 15 panelmembers have no expertise in the illness. (In most circumstances, thediagnostic criteria for a condition are developed by the field's topclinicians and researchers.) The critics fear that the panel will onceagain approach their illness from a psychiatric perspective, leadingto misdiagnoses and to treatments that are effective for peoplesuffering from depression and other mental health illnesses but notfor those with chronic fatigue syndrome.

A bit of context: The word "fatigue"--as everyone who knows anythingabout the illness agrees--trivializes the experience of patients, whoexperience a profound exhaustion. Both experts and patients prefer amore scientific name: myalgic encephalomyelitis, which means "painfulinflammation of the brain and spinal cord." (In fact, the illness isnow frequently referred to by the acronym ME/CFS; the IOM panel isalso supposed to render a verdict on the name when it issues itsfindings early next year.)

No known cause of ME/CFS has been identified, and no medication isapproved for treatment of the underlying disorder. Experts now believethat something, in most cases an acute viral infection, triggers anaggressive immune response that never shuts itself off. Because theillness is currently diagnosed through symptoms that can resemblecases of depression, distinguishing between the two can be difficult.

Leonard Jason, Ph.D., a professor of psychology at DePaul University and a respected ME/CFS researcher, offers perhaps the simplest approach to the task: He asks patients what plans they would make if their condition improved. A patient experiencing a depressive disorder, he explained, would likely have a hard time answering. "But someone with ME/CFS would probably begin making lists of all the things that they wanted to do," he said in a recent interview with BuzzFeed about the issue.

One significant stumbling block for research and treatment has beenthe lack of a single set of agreed-upon criteria. Scientists in theU.S. and Europe have developed half a dozen or more case definitionsover the years, for both research and clinical care. A 1994 definitiondeveloped by the Centers for Disease Control is consideredout-of-date; it requires six months of fatigue and four out of agrab-bag of eight of the common symptoms.

Many patients, doctors and researchers prefer a 2003 version developedby leading clinicians and scientists. Unlike the Centers for DiseaseControl and Prevention (CDC) definition, this version requires thepresence of exhaustion but also of an unusual symptom called"post-exertional malaise"--poor recovery of energy after modest orminimal physical effort. Many patients and experts consider this, notfatigue per se, to be the cardinal symptom of the illness. The 2003definition also requires the presence of sleep disturbances andcognitive dysfunctions. The CDC definition mentions but does notrequire these symptoms.

Despite the IOM's reputation, patients and experts are concerned notonly about who is on the panel but also about their charge. Thegovernment has requested that the panel consider a range of existingdefinitions, including some guidelines that appear to identify apopulation disproportionately suffering from depression. Althoughdozens of experts signed a letter urging the Department of Health andHuman Services to adopt the 2003 criteria as the basis for furtherrefinements and abandon the IOM study, Secretary Kathleen Sebeliusflatly rejected the request.

The IOM, which is supposed to deliver its report early next year, isreceiving approximately one million dollars for its work. Given thatannual spending by the National Institutes of Health on ME/CFS is onlyfive million dollars--much less than many illnesses that affect farfewer people--the experts noted in their letter that it made more senseto spend available funds on researching the pathogenesis of thedisease rather than on new diagnostic guidelines. The experts andpatients fear, understandably, that if the IOM panel adopts afatigue-oriented definition that does not prioritize other symptoms,their efforts to gain respect and credibility for ME/CFS will havesuffered a crippling blow.

"Sick people with potentially curable illnesses are shunted around between separate specialists who don't pay attention to anything except the body part they've been trained to focus on, a problem known as care fragmentation "

"When it comes to unexplained symptoms, doctors have never been very good at saying, "Wow, I really don't know what is causing this problem. Perhaps we'll know in the future, when we have flying cars and such." Instead, patients are often told that they're hypochondriacs, mentally ill, or just plain faking it to get attention. This is still happening today, with little-understood conditions like fibromyalgia and chronic fatigue. And don't think you can avoid this by developing a relatively well-known illness: You can have a medical condition that's been in the scientific literature for decades, but if your doctors were asleep in class that day, they'll be happy to call you a hypochondriac, too. Several doctors did it to me."

"maybe medical science could notice this historical trend of misdiagnosing legitimate illnesses as hysterical lies, and admit that if a bunch of people all start having the same physical symptoms, maybe they're not all just anxious or trying to get attention? Because trust me, there are many ways to get attention, and any of them would be more fun"

On July 22, 2009, a special meeting was held with twenty-four leading scientists at the National Institutes of Health to discuss early findings that a newly discovered retrovirus was linked to chronic fatigue syndrome (CFS), prostate cancer, lymphoma, and eventually neurodevelopmental disorders in children.

When Dr. Judy Mikovits finished her presentation the room was silent for a moment, then one of the scientists said, "Oh my God!" The resulting investigation would be like no other in science.

...

On this journey Dr. Mikovits would face the scientific prejudices against CFS, wander into the minefield that is autism, and through it all struggle to maintain her faith in God, the American justice system and the profession to which she had dedicated her life. This is a story for anybody interested in the promise and peril of science at the very highest levels in our country.

REVIEW:"This story raises questions we all need to be asking about our science, our scientists, our politicians, and our society. PLAGUE doesn't just identify a retrovirus, it points to a weakness in our culture.​"

Announcing the launch of a new website for the book, "PLAGUE: One Scientist's Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome, Autism, and Other Diseases". It's a must read of events that would result in the writing of PLAGUE "The Book". There will be much more coming to the website soon!

The book is being released by Skyhorse Publishing on May 6, 2014. The authors hope the story will enlighten, challenge, and bring clarity to the efforts of Dr. Judy Mikovits, as well as lead to answers for the millions who suffer from these chronic diseases. Please visit the website at: www.plaguethebook.com